My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys.
My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys.
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我的肾脏身份：了解儿科患者及其家人的肾移植之旅。
DOI：
10.1111/petr.14343
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发表时间：
2022
影响因子：
1.3
通讯作者：
Pollack,AriH
中科院分区：
文献类型：
--
作者：
Dunbar,JuliaC;Bascom,Emily;Pratt,Wanda;Snyder,Jaime;Smith,JodiM;Pollack,AriH
尽管肾移植是肾衰竭儿童的治疗选择，但它可能导致患者及其家属的焦虑，导致心理社会功能、依从性和自我管理能力下降。我们着手确定所需的信息需求，以帮助儿科患者和他们的家庭在移植后的经历背景下，因为他们在整个移植过程中重新校准他们对正常的理解。方法参与者提交的照片与他们的感受有关：(1)担心，(2)自信，(3)与没有肾脏疾病的同龄人相似，(4)与这些同龄人不同。这些照片是一次深入采访的基础。结果19人（10名儿童移植受者和9名护理者）在移植后平均8年接受了访谈。我们确定了参与者在整个移植过程中与重新校准他们的“正常”版本相关的五个特定主题和紧张关系：(1)交换信息（信息消费者vs.信息贡献者），(2)过渡管理（家庭管理vs.自我管理），(3)建立信心（担心vs.自信），(4)讲述自己的故事（隐藏vs.自我表达），以及(5)使肾移植正常化（感觉不同vs.感觉相似）。这五个主题/紧张关系形成了一个人的肾脏身份，在整个移植过程中从消极转变为积极，随着时间的推移，说明了肾脏移植更加抽象和复杂的描述。随着时间的推移，让患者查看他们的肾脏身份可以帮助他们对移植后的进展进行自我反思，并可能帮助临床医生、患者和他们的护理人员识别他们可能需要更多支持的障碍和领域，以确保他们成功地参与到他们的护理中。
BackgroundEven though having a kidney transplant is the treatment of choice for children with kidney failure, it can cause anxiety for patients and their families resulting in decreased psychosocial functioning, adherence, and self‐management. We set out to identify the information needs required to help pediatric patients and their families contextualize their posttransplant experiences as they recalibrate their understanding of normalcy throughout their transplant journey.MethodsParticipants submitted photographs related to feeling: (1) worried, (2) confident, (3) similar to peers without kidney disease, and (4) different from these peers. The photographs served as a foundation for an in‐depth interview.ResultsNineteen individuals (10 pediatric transplant recipients and 9 caregivers) were interviewed at a mean of 8 years posttransplant. We identified five specific themes and tensions our participants associated with recalibrating their version of “normal” throughout the transplant journey: (1) exchanging information (information consumers vs. information contributors, (2) transitional management (family management vs. self‐management), (3) building confidence (worry vs. confidence), (4) telling one's story (hiding vs. self‐expression), and (5) normalizing kidney transplantation (feeling different vs. feeling similar). These five themes/tensions form one's Kidney Identity, shift from negative to positive throughout the transplant journey, illustrating a more abstract and complex account of kidney transplantation over time.ConclusionsHaving a patient view their Kidney Identity over time may support self‐reflection of one's progress posttransplant and potentially help clinicians, patients, and their caregivers identify barriers and areas where they may need more support to ensure their successful engagement in their care.